From Canada – Ron Ternoway: The Trials Continue!
It’s been more than 14 years since my Waldenstrom diagnosis, and I’ve spent half of that time on clinical trials.
Over the last year, I have been enrolled in a U.S.-based clinical trial of LOXO-305, also known as pirtobrutinib—a true next-generation BTK inhibitor which works differently than ibrutinib, acalabrutinib and zanubrutinib.
For this Canadian lab rat, the pandemic has been a blessing and a curse.
As a matter of fact, I stopped writing this update to attend an online trial check-up with my Florida hematologist. My onsite trial visits had been scheduled to take place every four weeks for the first year of my trial, but Tele-Health has allowed me since June to do all my bloodwork, CT scans, and EKGs in Halifax. I am also able to meet in-person with my family doctor and email the test results to my trial nurse prior to online appointments. If all goes according to plan, I will not need to travel until my one-year trial anniversary at the end of November.
A blessing of the pandemic is that staying home relieved some pressure on my wallet. I’ve done my homework on the financial implications of trial participation, but was still regularly blindsided by surprise billings, errors, and omissions.
A curse of the pandemic has been the uncertainty of international travel and (sort of) closed borders. What was once a four-hour flight from Halifax to Orlando is now a 12-hour ordeal through Toronto and Chicago. I qualified for an essential medical exemption from quarantine but still had to spend nights in Montreal because of missed connections. And wearing an N-95 mask for hours on a packed U.S. domestic flight is definitely an acquired taste.
A silver lining is the wonderful travel agency that took care of all my bookings and capably handled unforeseen developments through its 24/7 help desk. Colpitts Clinical Travel, which was employed by my drug trial sponsor, proved capable, compassionate, and caring.
So, you ask, is it worth it? The time, the expense, the risk, the radiation?
A resounding yes on two counts – for my fellow WM travellers and for me.
I think it is important to note that all treatments start as clinical trials. And after 10 months on my clinical trial, my blood counts are normal. And my only side effects have been energy, enthusiasm, and optimism.
Every moment for me is an opportunity for joy.
I have shared my experiences from the patient point of view, first at the 2017 Phoenix Ed Forum (see link to video and slides below) and then in the October 2020 IWMF Torch newsletter (page 4).
Halifax, Nova Scotia